“I Wish I Knew…”

One of the many campaigns going on during September for Ovarian Cancer Awareness Month is #IWishIKnew by the National Ovarian Cancer Coalition – more details at https://iwishiknewovca.com/  And as I thought about what it was that “I wish” about this whole damn thing…it’s probably anything, to be honest.  That I would have known something prior to being diagnosed, because I knew nothing  upon hearing the words “ovarian cancer” except that women died from this disease more times than not – currently I feel like I’m a walking information bank for most things OVCA related (I am NOT an expert, I don’t want to be!).

But what if in my gynecologist’s office, instead of seeing all the options for birth control on the walls and counters, there would have been information on ovarian cancer, or any gynecological cancer for that matter?  The signs, what to look for, that this wasn’t covered in my annual pap smear – Would it have made a difference or would I have just looked past it like I did everything else because this wasn’t pertinent to me at this point time?  Would it have allowed my friends who are currently either STILL in the freaking fight for their lives, one has currently been trying to find SOMETHING, ANYTHING that will work for the last 22 months, others are finishing up and starting treatments for recurrences? These things are something I will never know, unfortunately.

You see, I feel like I’m a fairly intelligent human being and ovarian cancer has made me feel like the complete opposite more times than not – because I just don’t understand how I could have been so completely uninformed about something this serious, this life threatening, that happens to 1 in 75 women.  1 in 75 women seems like quite a lot to me.  1 in 7500, okay, I don’t feel so badly about not knowing…maybe.  I think every woman should thoroughly  understand what they’re screened for, or not,  in their annual pap smear – do you know how many times I was asked when my annual exam was, after I was diagnosed, and looked at like I wasn’t properly taking care of myself when that question was asked??  And then when I would respond with “a year to the date I was diagnosed, almost.  Ovarian cancer isn’t screened for in your annual exam, there is no preventative screening test in place,” the looks of shock on the other person’s face is one you won’t forget…because as luck would have it, they didn’t know any of that information either.  Nor did they know what the symptoms of ovca were.

So what if all the information was given to us, what if there were informational pieces posted in and around our OB/GYN’s offices regarding not only ovarian cancer, but all gynecological cancers?  What if we were specifically told what we were screened for in our annual exam and pap smear – I can’t recall ever having a conversation about this – would it have made a difference in my life or others?  Would I have at least known what ovarian cancer was?

Know the signs and symptoms: Bloating, pelvic/abdominal pain, inability to eat/feeling full quickly, changes in bowels/menstrual cycles, frequently needing to urinate. I also have horrible lower back pain and heartburn like nobody’s business!

Ummm…Where In the World Have You Been??? Good Question, Let’s Catch Up

I know…I said at the beginning of June my fatigue was rough, then I was still exhausted in July, and the trend has continued.  I’ve legit been taking naps after work when I don’t have the children, trying to spin after the naps, during the week, then do my lymphadema stuff, then it’s time to sleep.  The weekends are full of riding, doing things with the kids and enjoying spending time out and about.  So, this has been put on the back burner, for no other reason, then I’m tired and will be honest, probably just haven’t allowed myself the time I need to adjust to this life I now live.

So let’s do a quick Q&A to answer a lot of the questions I’ve been getting, and hopefully we’ll be all caught up and can start fresh, lots going on in the world of Me!

Aren’t you concerned that you’re so tired?  Great question, I was!  I was VERY nervous…because it’s taken everything for me to literally pick my head up off my pillow in the morning for the last several months.  The end of July was my one year N.E.D. check up, but I actually had my blood drawn two weeks prior while at the hospital for my dad’s surgery.  All was good, single digit numbers.  Went to my appointment and the Resident, who I’ve had in the past, said “oh gosh, you checked a higher number on your fatigue level than normal, what are you doing about that?”  My response was “nothing,” thinking that she’d say I wasn’t resting enough or something like that…which wasn’t the case at all.

After I said “nothing,” I quickly followed it with “but she’d (Dr. H) tell you that I need to slow down, I’m working out, training for the 100 mile ride…” to which the Resident quickly stated “actually, the thing we recommend for fatigue is exercise, so you’re doing the correct thing.”  I’d say the level at what I am currently training at though, is causing a lot of it…6 more weeks and then I plan on taking my weekends without the kids to relax a bit and see if that doesn’t help a little.

Oh my goodness, your Dad had surgery, what’s going on??  Yeah, I think a bit of stress is coming into play with a few things as well on the fatigue front, this being one of them.  My Dad was diagnosed with prostate cancer right before his first 3-month post-chemo check up for non-Hodgkin’s Lymphoma – not something any of us anticipated.  After having the biopsies done to confirm he had a high concentration of mixed grade prostate cancer, with one lesion, he decided on surgery to treat the issue…but being my Dad, he wanted to make sure it was done according to the schedule we had in place for the summer…which meant waiting until after the vacation we had planned with the kids, and getting it done just in time for him to be able to walk with me at the PGA Championship the first full week in August.  Everything went really well, his first post-surgery blood draw was great, normal levels, and he’ll continue to have his levels checked every 3 months for the first few years, then taper off to one time a year at the 5-year mark.

Any big plans for Ovarian Cancer Awareness Month?  I know the answer to this should be ‘yes,’ but I’m heavily involved with Pedal the Cause at the moment, and I didn’t calculate in my head how much time I’d need to dedicate to both.  So the answer is ‘maybe’…be on the lookout, it won’t be anything too grand, but it will be enough to create the awareness I’m looking to achieve.

How are the kids? Olivia and Jaxson are FANTASTIC!  Jaxson is now in Kindergarten at the same school with Olivia and although he tells me he doesn’t like it, I think he really does…because he has a huge smile on his face every day I drop them off as he’s waving good-bye, walking up the sidewalk.  I will say this though…they remember all that was 2017, probably more than I’d like for them to.

I fell and hurt my hand a couple weekends back and I said something like “I think I broke my hand” and Jaxson started crying… he asked me if I’d have to stay in the hospital like before, for how long and would he not be able to touch me like that ‘one time’ – that ‘one time’ was a long recovery period from back to back surgeries, where they’d have to sit in a chair next to me, until we finally got to the point that they could sit in my chair with me, just not in my lap like they once were used to.  To be honest, I still can’t have them sit on my lap too long without having a bit of pain…it’s just the way I healed, and I hope with time it gets better.

Outside of that though…you’d never be able to tell we’re any different than any other family of three walking down the street, smiling and laughing

What is Pedal the Cause?  Hang tight on this one, I have a big post coming on Sunday for this one and I’ll answer all the questions you may have any more!

 

My goal is this going forward: 1-2 posts a week, some will be about me, some will be about life, and some will be about others. The long period of time without posting isn’t something I plan on doing again any time soon…I just need a bit of a break, I think that happens from time to time.  And on that note…go and enjoy the weekend, make memories and laugh!!!

June 5th – One Year Later…

Top and Bottom Left were last year – we celebrated his big day, #4, the day before and while Olivia and I were holding up 6’s, he was representing his b-day! HA! Top and Bottom Right were today and yesterday – we made it a full year, all in one piece, things getting much better, although coincidentally I looks a little tired in both of the top photos – LOL, so is the life of a mom!

 

June 5th represents a couple things for me – the day my youngest was born and the my last day of chemo – two fairly significant things in my life to date.  I still can’t believe it’s been one year – it has been ONE FREAKING YEAR since my last chemo treatment!!!

Some days it seems so long ago, and others it seems like I just walked out the door.  Jaxson was turning 4, now turning 5, and while Olivia was off to swim team practice with my mom. My dad went with me to the hospital, and we went about things just like normal, but what I thought the last treatment was going to feel like wasn’t what I’d expected at all.

The words from my nurses went from your “last treatment” to your “last scheduled treatment”…wait, what???  The thought had never crossed my mind that I may actually have to do this again.  We went through the entire process just like we had in the past – I did all the necessary things I would have done had I been coming back for another treatment.  I think in my mind I saw myself  walking out of there with nothing – no post medication, no “boyfriend” attached to my arm (Neulasta), I’d just feel like crap and figure out how to deal with it.  So, because of those words and because we were proceeding like we had all the other times, just in case I’d need another round, I didn’t ring the bell…I didn’t want to, I was afraid I jinx myself.

Wait, you didn’t ring the bell??  No, I didn’t.  While most of you have celebrations from your last day of treatment, I walked out feeling like poo (I did not tolerate carbo/taxol really well), got in the car and assumed my position in my chair, praying the nausea wouldn’t be quite as bad this time around.

“But I don’t understand, why you didn’t, you’d finished your scheduled treatment, you made it to the finish line” – yes, I had in fact done all of these things.  But, the fearless person I may come across as, wasn’t so fearless in this moment.  I was scared to death that if I did anything symbolizing I wouldn’t be having any additional treatments, I would ruin everything and my labs and post chemo scans wouldn’t come back good.  I wasn’t in a place to “celebrate” finishing something that was scheduled – I hadn’t gotten to the place where you celebrate everything…let me repeat that, you celebrate EVERY(!) SINGLE (!) milestone that is a completing something  or good news, regardless of what may still be in front of you.

One year later I can tell you that I would have rang the bell that day, instead of waiting until I got the all clear from my scans and labs.  I would have smiled as I walked out of the room that day, knowing that I’d accomplished the huge task Dr. Hagemann had given me – I made it, I completed all 6 rounds of treatment, on time, without too many obstacles (despite feeling awful the majority of the time), with the kids still all in one piece.  You see, I hadn’t just made it, we’d all made it – this wasn’t just a challenge for me, it was a challenge for them too.  We’d proven that life may throw you something totally unfair, but with the support of our friends and family we were able to make it through with flying colors, because hard crappy things can be done!

Towards the end of July I’ll have my one year N.E.D. appointment – it’s kinda crazy to look back and think about all that has happened since June 5, 2017 and now.  I’ve gone and hiked miles upon miles when there were some days I could barely make it down my hallway to the bathroom.  My hair is growing back (yes, I just cut off quite a bit if you’s noticed – my hair is growing back super strange and is very coarse and I still had some dead parts).  I’m back at work – started part time and then gradually made my way to full time.  And as time has passed, routines are getting back in place.  And yes, I still have days where I cry thinking about all that happened during those 6 rounds of chemo when I think back – it’s what kept me alive, but it wasn’t the most fun thing I’ve ever done.  In fact, it was down right terrifying.

HAPPY BIRTHDAY J-man!!!

Grand Canyon Rim2Rim – Part II – But, Why??

Starting out at the North Rim – I’m a very little way down at this point. You actually start the hike on the north side in a little forest of sorts.

 

And my response back would be “…but why not…”

Multiple times I’ve been asked why this, why is this what you chose to do?  I feel like everyone is looking for some profound response, like I had an epiphany or life changing event (yes, I get it, I did!) that caused me to choose this, but what if the only reason I did this was because I’m merely living my life, doing what I want to do?  Would that answer be good enough?  Because it should be, without a doubt, reason enough to do this and everything else that’s on my “list”.  And no, please don’t call it my “Bucket List” – in my head that implies I’m doing things because I won’t be here – for me, it’s my “Live Life List.”

So for those of you wondering why I did this, why something so big and so bold, it was because I merely went down the list of things I have down that I want to do, and this one just happened to be the one I picked.  I didn’t do this for anyone but me, and my three friends who joined me were just as crazy and didn’t think twice about me doing it – okay, maybe they thought twice, verbalized any concerns they may have had, but knew that if I said I was going to do this, they had to let me do it. It’s a mutual unspoken respect we have for each other – supporting the other.   And, let’s be honest, a part of me really wanted to do this, to prove that I still had it in me to do extreme things.  Knocking this out gives me the confidence to try just about anything.

What I wish people would have said prior to me taking off on this adventure, was how proud of me they were for trying, that this was going to be one for the books, or doing this was going to be one heck of an accomplishment considering where I was at this point in time last year…but not many did.  Most were still concerned about my wellbeing, making sure I realized what I was actually trying to accomplish, and overlooking the fact that for the last 5 months I’ve been busting my butt so I would be able to do this. Some said this was going to be an amazing trip, but you could tell they were still hesitant about the entire thing.

Here’s the deal – I can’t go out like the normal person who’s in great shape and do a normal training schedule, I have to make sure that I have an extra month or two in order to be in the right position to do things of this nature.  The things I need to do are a little different as well – I incorporated a lot of HIIT and Tabatta workouts in order to try and increase my lung capacity – cardio is hardio, y’all.  Remember, I’ve said it feels like someone is standing on my chest while doing high intensity workouts, I’m not sure that feeling will ever will go away fully.  And, as I found out, I have to keep in mind that my large joints will only allow for me to go so far, for so long, without reminding me of all I’ve been through, and that’s okay(10 days later and I FINALLY got some relief in my knee joints!).  It’s why I’ve been cycling indoors throughout the winter, not only for this, but so that when I hit the road next weekend to start my training regimen for my 100 mile ride for Pedal the Cause at the end of September, I wouldn’t be starting at ground zero.  The normal training schedule would have me starting in July, pretty hardcore – June will be my buildup, so I’m ready for that as well.

So for those of you who’ve been worried about me doing the 100 mile course on September 30th, completing the Rim2Rim of the Grand Canyon should reassure you that I’m going to be okay – yes, I know what I need to do in order to not only complete this, but complete it in the time I’d like to.  I enter everything like this with a bit of nerves attached – if I didn’t, it means I wasn’t fully aware of the amount I’d bitten off to chew, and I am, which means I’ll be fully prepared.  My hope, is that by sharing all that I do, big and small, others will know they can do hard things too no matter what their situation in life may be.  Go and do the things that might scare you a little bit – more times than not, the reward will be worth it!

Grand Canyon – Rim2Rim – Part 1

View from the South Rim the night after completing the Rim2Rim

I survived and am home! Sooo, how’d I’d do, did I complete what I set out to do??? Yes and no…and I’m a little disappointed, but extremely proud of myself for completing my first Rim2Rim…yep, you read that correctly, I’m missed the hike back up to the North Rim. I’m sure some of you who follow me on social media wondered “what happened to the other 2R.”

Sedona – Broken Arrow Trailhead

Who all went, how’d the day go, would I do it again, let’s get to the good stuff! Wednesday morning myself, my friend Kim, Mandi and Brittany all met up in the great city that is Phoenix (although I think Scottsdale may be more my speed if I’m actually staying in the area), and headed north, making our first stop in Sedona for a hike and some fantabulous food, then it was off to the North Rim, where we’d stay in Page for the evening.

Top of the North Rim

At 5:30am on Thursday morning, 29 degrees, we all headed out together, down the North Rim, with our sights on the South Rim. Many of you wondered how Brittany made it on the hike less than 36 hours after treatment – that girl is amazing, and went 5 miles in with us…a strenuous 5 miles in, at a steep grade down. At Roaring Springs Kim and I would say our goodbyes and be on our way to the other side, and she and Mandi would start their way back up

To try and explain to you the colors, the variations of terrain and vegetation as you descend in and across something this massive is something I will never be able to fully convey – I was in awe at every view along the way, one bend was more breathtaking than the next.

We knew what to anticipate, where we needed to be to each point by and we may have been a little behind schedule due to the photos we kept stopping to take along the way. Every hour we’d stop to eat one of our quick energy bites/chews/blocks and chug a hydration or performance mixture of fluids – I’d researched what was mandatory in order to make this a success.

13.3 miles in we’d find ourselves at Phantom Ranch, it was about 92 degrees at this point. the only place to stay on the Canyon Floor. I’d read I could do a little something fun for the kids from this location, mail them postcards that would be delivered to the post office by Mule (this is the only way to get things in and out of the Canyon), and I grabbed myself an expensive glass of lemonade, which was a lovely change…after all of that, it was on to the Colorado and the ascent would start up the South Rim, 9.8 miles.

The smile would fade within 5 miles – LOL – This was about to get REAL, VERY QUICKLY!

The walk across the Colorado was amazing!!! I think it may have been one of my most favorite viewpoints in the Canyon. Kim and I were feeling really good at this point, no problem, we can do this…and then the last 4.7 miles were upon us and things were becoming challenging (by the way – there are no warning signs on the North Rim – there are warning signs all over the South Rim due to the amount of tourists that visit). I did not take many photos from the Colorado up to the top – my energy needed to be reserved for getting out.

We walked through trails of sand, water, mud and rock…along with makeshift stairs. The last 3 miles were grueling, with the last 1.5 miles being the worst (i cannot explain how challenging it is, it’s a complete mental game, because your body is pooped!)…the tourists could tell we were pooped and after the .9mile mark we’d run into several asking if we were “coming back up from going to the river”…the look on their faces when we said “no, we started at the North Rim” was one of amazement – several told us we could do this and were so encouraging as we asked about how much further did they think we had, and the lovely woman at the top who took our pic, was so nice, she got all different angles for us without having to ask once she’d found out what we’d accomplished- only 1% of the visitors to the Grand Canyon actually see the Canyon the way we did.

At what point did I know I wasn’t going to be able to make it back across?? Somewhere between the 3 mile and 1.5 mile mark – you see, the joint pain I get from chemo with extreme activities (an after effect that may eventually go away with time), had set in by this point big time. I was using my hiking sticks to support a lot of my weight, and it literally felt like I had a knife in the side of both of my knee joints. If you’ve had chemo, you possibly know what I’m referring to. I knew it would take up to 5 days for it to resolve itself, and for me to go back in the next day was something I shouldn’t consider since the only way out of the Grand Canyon, is to do so with your own two legs – “going down is optional, coming up is mandatory”.

From our starting point to the end, this lady kept pushing me the entire way – Kim has been there to pick me over the last year, and followed me across the Grand Canyon so I wouldn’t go by myself!

13 hours later, and I’d crossed the Grand Canyon from North Rim to South Rim, 6,000 feet in elevation down to the Colorado, 4,500 feet in elevation up to the top of the South Rim, just over 24 miles total…it’s something I never thought I would have been doing a year ago the day I started the hike, as I was struggling to pick my head up off the pillow after treatment #5. The ladies that went on this trip with me are special for one reason or another – each holds a very important place in my heart.

At the top of the South Rim shortly after completing the Rim2Rim

Will I do it again, you bet I will! Do I think I’ll ever be able to do the full Rim2rim2rim, honestly, I’m just not sure…and I’m not one to say “no”, but at this point in time, my body can only handle a Rim2rim and I’m MORE than good with it! It was a trek of a lifetime and one that I plan on doing several more times, because it was THAT amazing!

**this is not something to just go and do – extensive training, preparation and research is needed before taking on a rim2rim – it is highly discouraged by the park due to fact that you have to get yourself out of the Canyon yourself**

Today We Use Our Voices As One – World Ovarian Cancer Day 2018

May 8th, 2018 – World Ovarian Cancer Day – The One Day of the Year We All Raise Our Voices 

Last year, I had no idea how to go about doing this, but I found a small group of ladies who were willing to share their story – this year, I wanted to do it just a little different, with a larger group of ladies.

I asked them for a couple of things – age and stage of diagnosis, where they are in this whole ovarian cancer survivor fight, and what they’ve either learned from all of this or what they’d want you to know about ovarian cancer. Without fail, you’ll notice three things we all felt the same about – these are the things we want you to know:

1. It can happen to anyone – ovarian cancer doesn’t discriminate – so please stop looking at our symptoms based on our age, just look at the symptoms.

2. Your annual exam and pap smear do not screen for ovarian cancer. To date, there is NO SCREENING TEST for ovarian cancer.

3. These are the main things most women experience as symptoms for ovarian cancer: Bloating, pelvic/abdominal pain, inability to eat/feeling full quickly, changes in bowels, irregular menstrual cycles, and needing to wee a bit more often. If you have any things that persist for longer than 2-3 weeks, regardless of if they are signs of ovca, go to the doctor.

The one thing I wish someone would have done, that was around my age, was to use their voice in a manner in which I could have heard it, so I would have known ovarian cancer could have happened to me. I had no idea what to look for, I had no idea it could happen to me, but what I did and do know, is that the statistics are grave for reasons they shouldn’t be! One of them being continual misdiagnosis for younger women. No woman should have to be in the fight for her life because somewhere along the way she never heard the word “ovarian cancer”, or if she did, that she wasn’t fully informed about what to look for. Every woman in the world is at risk of developing this deadly disease!

But enough from me – here’s what some badass ovarian cancer survivors want you to know about them!

Andrea (Texas) – Diagnosed at age 37, Stage Ic – the cancer had spread to my abdominal fluid, so I was treated aggressively with chemo. Since my mother-in-law was a survivor, the symptoms were on her fridge, I knew what to look for and went straight to me OB/GYN. Both of my ovaries were effected and I would undergo surgery for a full hysterectomy. I’ve been cancer free for 6 years!

My mother-in-law was not as lucky, she was misdiagnosed for 5 months, being diagnosed at Stage IIIc when they finally figured out what was going on. She had no evidence of disease for 5 years, but had a recurrence, which she fought hard for another 5 years – this past October she passed away.

My hope is that all doctors take these symptoms as seriously as my doctor did, so it can be caught in the early stages.

Brittany (Texas) – Diagnosed at 28, low grade and high grade ovarian cancer, stage IIIc.  Currently doing immunotherapy through a clinical trial at M.D. Anderson.

I wish women, particularly young girls, knew they aren’t being checked for OCVA in their annual exams! I wish they knew what the symptoms are so they can recognize it & be diagnosed EARLIER…because advanced stage OVCA has very, very tough odds. But I also want EVERYONE to know joy can be found in even the toughest of circumstances! Jesus makes beauty from ashes & brings victory through the impossible!
(If you like Brittany’s hat, please go to https://www.monogramminglife.com/change-your-altitude-trucker-cap/ – all profits are going to Colleen’s Dream, an organization both Brittany and myself support!)

Carmen (Spain)- Diagnosed at age 49, Stage II, 10 days after my mom died due to ovarian cancer. I am BRCA 2+, I had 6 sessions of QT, and 3 interventions in 1 year, one of them one more bilateral prophylactic tectonics with prosthesis. I am now well and this month I have to review I did not have any symptoms, I was operated on for cysts and my CT and tumor markers were good, it was found in pathological anatomy

 

Charlotte (Canada) – Diagnosed at age 34 with Stage IC ovarian endometriod cancer – at the end of April I celebrated my one year anniversary of my completion of chemotherapy.

Things I’ve learned:

We need learn to listen to our bodies and advocate for ourselves if something doesn’t  feel right.

Women (and men) need to stop being afraid to talk about our reproductive health. The “lady parts” have names and functions and are important part of our health!

Caregivers are crucial. If you are stubborn like me you may hesitate to let them help, but let them. It is as much for you as it is for them. Everyone wants to do something tangible in times of illness or loss.

Doctors and Health Care aids are amazing, but nurses are angels on earth.

Recovery can take way longer than expected.

Hot flashes SUCK!

Not having to shave is sweet, being bald can feel great and wigs are awesome…but losing your eyebrows is the worse and eyelashes really do protect you from getting stuff in your eyes.

Above all, I want people to know that the cancer fight isn’t easy, and sometimes the hardest part is after the treatment is over and you are allowed to reflect on the journey your body, heart and mind has gone through. Allow yourself to mourn the parts of you that you may have lost, but eventually also allow yourself to celebrate your survival. When over 50% of women diagnosed with the disease don’t make it passed 5 years, it is truly an honor to be a survivor. Finally, that statistics needs to change…with days like World Ovarian Cancer Day, I’m hopeful that awareness and funding will increase and so will the number of teal sister survivors.

Kandise (Nevada) – Diagnosed at age 55, Stage III. My last treatment in September 2017, and I’m currently N.E.D.

I wish more women were aware of the symptoms and that your pap smear doesn’t screen for this disease.

 

 

 

Kelly (Oregon) – Diagnosed May 20, 2016, Stage IIIc at age 56. I am currently N.E.D. (No Evidence of Disease), 16 months out from my last treatment! I want women to not write off symptoms like persistent bloating or constipation. It’s not good if it lasts more than two weeks.

I wish I had known ANYTHING about Ovarian Cancer. I knew nothing.

Kristen (Australia) – Diagnosed at age 21 with Stage IIIC Low-Grade Serous Ovarian Cancer. Still in treatment 4 years later, recurrences are the worst!

I’d love for people to know the signs and symptoms of ovarian cancer and that there’s no screening test.

 

 

Mandy (Kansas City) – Diagnosed at 35, stage Ic endometroid tumor. Currently just finished round 4 of chemotherapy. I wish doctors had a plan in place for monitoring for ovarian cancer and made patients aware of symptoms and did not blow them off. Sonograms are easy and relatively inexpensive.

 

 

 

Natalie (Trinidad) – Diagnosed at 37 with stage IIIC ovarian cancer. I had just lost my father a few months before to stage 4 colon cancer. I was totally devastated. I am now 41 years a have had three recurrences.

I somehow feel much stronger because of this journey. I have the best support system in my daughters. I am still on maintenance treatments, but, I am still here!

Paula (Illinois) – Diagnosed at age 54, State IIb and I’ve been N.E.D for 18 months! I wish others knew that there was no screening test in place for ovarian cancer.

 

 

 

Randalynn (me! St. Louis) – Diagnosed at age 36, stage IC and endometrial cancer, N.E.D. 10 months. My symptoms disguised themselves as “stress related” things – it wasn’t until I would end up in the E.R. with labor like pains I would find out I had a cantaloupe sized tumor on my right ovary, but still they thought it was nothing more than a dermoid cyst. I wouldn’t find out I had ovca until a week after surgery to remove the cyst.

To those of you reading this who may be newly diagnosed, what seems impossible and scary in the beginning, is something you will be able to get through – you’ll find more strength than you ever knew you had. I wish more women knew they weren’t screened for ovarian cancer in their annual exams – there is no screening test in place. This can happen to anyone – I have no genetic reason, or family history to explain how I ended up with both primary cancers at the same time.

To those of you who are stepping out into the world “after” – I think it gets easier, but I’m still trying to figure it out. I’m not really sure you ever really figure out how everything works after being diagnosed with cancer – but I’m hopefully that a “new” and “better” me emerges from this whole thing, with an understanding that although my life might not be like it once was, due to experiences, it doesn’t mean that I still can’t do all the things I may want to, I just may have to do them in a different manner.

Shaylee (Kansas City) – Diagnosed October 2017 at age 23, after being told TWICE I was “too young” to have cancer. Stage: IIIC low grade serous ovarian cancer.

What I thought then: cancer was going to rob me of any & all opportunities & I’m gonna immediately die at a young age.

What I know now: cancer does take a lot, but if you dig deep enough you’ll find you can gain SO MUCH MORE. My entire perspective on life has changed & now I know what truly matters. Whether I have 5 months or 50 years left, I’m able to live each day to the fullest. It’s possible to SURVIVE & THRIVE, even when diagnosed young or in a later stage.

Shellie (Grand Rapids) – Diagnosed April 2017, with High Grade Serous Stage IIIc at age 40. Last chemo January 2018

What do I want people to know- Cancer is not a death sentence. Many people do survive. Also, just because you live a healthy lifestyle you are not immune from getting cancer.

My Grandmother was diagnosed at age 33, type and stage unknown, passed away 11/25/1963

What she would want people to know- Listen to your body when something doesn’t feel right go to the doctor keep asking until they figure out what is wrong with you. She went to the doctor for months and was misdiagnosed. Treatment was not available when the cancer was discovered. She died within nine months of her initial doctor visit. Be your own advocate.

 

 

 

Sherry (Florida) – Diagnosed at age 49, Stage IIIc, currently N.E.D for the past 3 months, am awaiting my three month scan on May 9th.  Please remember this is no reliable test for ovarian cancer – listen to your body.

 

 

 

 

Shirley (Florida) –Diagnosed at age 40 with Stage IIIc, high grade serous carcinoma. I wish there was more awareness of ovarian cancer….because I had several symptoms, but it was nowhere on my radar of things that it could be. I thought for sure the bloating and fullness was from the “fun foods” of summer and vacation, I have had reflux for ages, so I chalked it up to it “flaring up” so then when there was finally pain.

I waited until it was pretty severe, and still thought it was a digestive issue before heading to ER. Awareness just isn’t as abundant as with many other cancers…and sadly the stages of diagnosis are usually so advanced!

Stephanie (Vermont) – Diagnosed at age 37 with stage IIIc ovarian cancer and stage 1 uterine cancer. I want the medical world and people in general to know this can happen to anyone. I didn’t have any family history, nor any other risk factors, but here I am, a cancer survivor!

I’m in remission with an type of ovarian cancer that can’t be cured – never give up, never quit!

 

 Vicki (Colorado) – Diagnosed at age 37, stage IIIa. N.E.D – Currently 40 years old, about to have my final (fingers crossed) reconstructive breast surgery (Vicki is a previvor, with her chances being elevated to develop breast cancer) and preparing mentally for the adoption process.

Ovarian cancer can happen to anyone! It’s is life changing. Signs can be as simple as bloating – I was diagnosed with mild IBS, and in reality, it was probably my ovarian cancer…

Vivian (Pennsylvania) – Diagnosed at age 52, stage IIIc clear cell high grade. I completed 12 weeks of chemo but found I was platinum resistant. We found an immunotherapy trial and I was on those drugs for 11 months. I developed severe arthritis from the drugs and had to stop BUT my scans cleared up and I’ve been N.E.D since Sept 2017!

Currently getting scanned every 3 months. I wish I would have known the symptoms of OC and I want people to know your yearly pelvic exam doesn’t detect it. That is why I try to raise awareness. I also have NO cancer in my family and I was tested for several cancer genes and I’m negative for all of them! It can happen to anyone!

Zena (Manchester, England) – Diagnosed at age 42, Low Grade State IIIc Ovarian Cancer. At first I was treated with chemotherapy for high grade, but we soon found out it wasn’t working and I had low grade. If you have abdominal swelling for unknown reasons, go to the doctor to have it checked out.

 

For more information on World Ovarian Cancer Day, please visit –http://ovariancancerday.org

So I Did This Little Thing – Living Out Loud 2018

 

So I did this little thing last night…okay, maybe it wasn’t so little.  And maybe I got to wear another fancy dress – that’s twice in 2 months!

Meri and Kim were there in full force to support me, along with several of my “Mommas”!

Over the summer, my neighbor and friend, Susan, asked me if I’d be interested in speaking at St. Louis Ovarian Cancer Awareness’s Spring event, Living Out Loud.  Without hesitation, I said told her absolutely!  And then it hit me, what in the world would I talk about…what did I have to say that someone else before me didn’t already cover, what could I say that would make a difference?  The summer and fall would pass, then the holidays, then the start of 2018 and I knew I wanted to get this whole thing mapped out in my head and spent some time thinking back things I’d been through, things people had said, things that might make a difference, and it was then that it hit me…I knew what I wanted to say, that might hopefully stick with the audience and maybe light a fire under them…

click here to watch the full message

I took the stage last night (click here), and used the microphone to not only briefly share my story and hit on the key things that are ovarian cancer, which most people do not know, but to hopefully inspire one person in the room to make the changes necessary to be in the best possible shape they can be.   Reminding them that although I don’t look like the typical person 10 months post-chemo, I am still effected by all of it and I push myself harder because of it.  That we should try to all be in the best possible shape we can be  in, in order to keep from having to walk over the threshold into an oncologist’s office, to minimize recurrences and elevate stress – this includes choosing wisely when fueling our bodies and getting the necessary amount of fitness activities each week.

Many people have told me how proud they are of me for stepping up to the mic, and several of you have even thanked me.  To all of them, I don’t do this for the thanks or for you to be proud of me, I do it for the women who have come before me and lost their battles, I do it for my friends whose battles with ovarian cancer are unrelenting, and for those who have yet to be diagnosed.  We have a voice for a reason, we should never be afraid to use it, no matter the circumstances.  Is it difficult?  Sometimes, because I actually have to think about everything that I’ve been through, still go through, and what is ahead of me.  Depends on the day.

The most difficult part is that because the outcome for those diagnosed with ovarian cancer is pretty grave, many people sitting in the room have lost a  family member or friend to this deadly disease.  I think hardest one last night was a mother who came up to me and thanked me for speaking, because her daughter, who I’m guessing was younger than I am, had lost her battle with ovarian cancer – that is when the reality of what could have been/or could be, hits home. (if you’re the mother who came up to me last night, I plan on reaching out to you – we’re now friends on FB, so be on the lookout for my name popping up in your inbox)

The event was a success though – so many good things came from the night!  While we celebrated those who are doing great things, we also honored those that we have lost, and are all striving to give women diagnosed in the future a fighting chance.

If you’re in the STL area and watch a morning show while getting ready in the morning – make sure the one you pick on Tuesday (if not everyday!), is KSDK, Rene Knott, myself and Dr. Andrea Hagemann did a piece together!  It will be featured sometime in the 6am hour.  Thank you Rene for all that you’ve done over the last week, we couldn’t do a lot of this without your help as well!

What is Pedal the Cause – Great Question!

You’re going to see a LOT of things related to Pedal the Cause over the next 5 months – so what is it, why is it important to me, and how does it work?  Hold on tight, here we go!

 

 

What is Pedal the Cause? Pedal the Cause provides critical funding to Siteman Cancer Center  (where I am treated) and Siteman Kids at Children’s Hospital through an annual cycling challenge (y’all, it’s legit, not a gimme!).  Donations “seed” best-in-breed ideas at both facilities to allow the cultivation of proof of concept and critical data. These seeded projects often turn into groundbreaking results that lead to new treatments and cures, prevention, and early detection diagnostics. Since 2010, participants have raised more than $19 million, funding more than 101 cancer research projects.

What is my involvement? This year, I am co-captaining the hospital’s Gyn-Oc team, Teal on Wheels, with my oncologist, Dr. Andrea Hagemann.  Why, might you ask?  Because we both feel it’s important.  Because we both want to see more people being active, living their best lives, in order to prevent them from having to walk across the threshold into the office of an oncologist.  While raising these dollars are critical to aid Siteman Cancer Center in world class research and care, it’s as important for communities to adapt a health lifestyle, along with sharing all that is ovarian cancer.

What started as a patient-doctor relationship has developed into something more – I’ve stepped up to the challenge and we’re teaming up for the best year ever!

How far are you riding? I’m a Century Rider, 100 miles.  NO, you do not have to ride 100 miles, I’ve kinda got something to prove – giving ovca the big middle finger, if you will.

So, if I don’t have to ride 100 miles, what are the other distances I can ride? Lots of options: 10miles, 18 miles, 37 miles, 50 miles, 67 miles, and 100 miles.  Don’t have a bike, but love to spin – PERFECT!  There will be tents on site the day of the event for you to spin in for 1-2 hours – I have a couple ladies coming in to join me, let me know if you’d like as well!

Is this a family friendly event?  Ab-So-Freakin-Lutely! Olivia and Jaxson will be riding in the Kid’s Challenge on Saturday!  Come join them!!! ALL ARE WELCOME!

Now to the good stuff – what are the dates, how do I sign up and what are the fundraising requirements?  The ride will take place on September 30th, with activities on the 29th as well.  Click here to join our team – there are lots of ways to be involved – if you don’t ride, we need volunteers and virtual riders as well!  There are minimum, achievable fundraising amounts, and fun incentives to really push yourself – ANYONE can earn a yellow jersey, no matter how you’re participating!

My SUPER snazzy YELLOW Socks!!!

What if I can’t make it and want to donate? PERFECT!  Every dollar raised goes directly to both cancer centers, for ALL forms of cancer research, not just ovarian.  Click here to donate! Currently I’m committed to a Yellow Jersey, raising $2500, I will be switching that up here shortly, once I hit that goal.

Will you have other fundraising opportunities for this event?  YES!  We are in the planning stages, but will soon have a list of things you can join us for to not only raise funds, but to learn more about ovarian cancer, the current research, and health and wellness opportunities.  As soon as they are finalized I’ll have them posted on this site – this weekend the Pedal the Cause tab will become active on this site.

How will my donation benefit me/my family/friends if we don’t live in the St. Louis area?  GREAT question! Siteman Cancer Center is an international leader in cancer treatment, research, prevention and education – they partner with numerous cancer centers, sharing findings, treatment options and plans.  So, although you may not be being treated at the Center itself, you may be benefiting from the studies they are conducting outside of the STL area.  We can ALL benefit from the monies raised!

I’ve got other questions/I want to join you: PERFECT!! Email me, it’s the best way to get in touch with me – kickovariancancer@gmail.com – I’ll try to respond in a timely manner, but am being pulled in several directions at the moment, so it may not be instantaneous.

 

This is something important to me, it’s important to many, unfortunately.  Even if you’re not directly effected by cancer yourself, chances are someone around you has been.  And what better of a way to raise funds for cancer than by doing so through something that could help prevent cancer from ever happening to you – a fitness related activity, like cycling.  Although we have goals set for this year, it’s not all about the money – it’s about bring awareness to all gynecological cancers, helping kickstart/maintain a health lifestyle, and so much more.

COME JOIN US!!!  Click Here

DONATE!!!  Click Here

Sometimes All You Can Do is Say “I Love You” and “I’m Here…Always”

I’ve written before about the whole people being so worried about what to say, and saying the right thing…when in all honesty, all one needs to say is something, anything.  And sometimes I feel like I should have the right words – I mean I’ve been through this, right??  I should know what to say in crappy situations – cancer, death, or other similar circumstances – but I don’t, and it frustrates me.

The end of this past week has been trying for two of my friends – both of whom there’s is nothing I can do to make the situations better.  Both sent me messages to which a four letter word flew out of my mouth when I read the messages, followed by my head resting in my hands and me staring at my phone…what the heck do I say back to this??  C’mon, you should know what to say in situations like this.  But I don’t…it’s times like this, I see how it may have been challenging to figure out what to say to me last year.

So what did I do??  Simple, what it came down to in both situations (different, yet similar) was me saying I was sorry, acknowledging that there was nothing I could do or say to make things better, if I could change things or say something to make it different, I would.  But I can’t, I can’t fix this, I can’t waive a magic wand and change things – trust me, if I could, I’d be sprinkling fairy dust EVERYWHERE.  I told them both I loved them and am here for them, no matter what, always…sometimes, I think that’s all you really need to hear. Let’s be honest, something is better than nothing…nothing is the worst.  

I never wanted someone to come in and fix things for me – they weren’t fixable.   I needed to learn how to manage everything that was happening to me on my own, I still do.  I just wanted to people to walk along side me, so I didn’t feel like I was doing this alone – and some did, and others didn’t…because they wanted to fix it, and they couldn’t. Sometimes your roll is to simply listen and not try and make things better – I’m learning this isn’t exactly the easiest thing to do, especially when you have a “fixer” mentality.  And sometimes all the person needs to hear is “I love you” and “I’m here for you…always.” Sometimes they just need to know you are there for them, should they want to talk.

Chemo Brain – You ALMOST Broke Me…

At first glance, the photo above looks like that of any ordinary person who arrived at the airport a little early and was killing time…but what you don’t know, is that person in the photo was barely holding it together, hardly able to breathe, on the verge of breakdown; holding it together by a string, with tears streaming down her face in an airport food court, while my friend on the phone was telling me this was no big deal..but to me, it was a HUGE deal…it meant that things were different….it meant that my chemo brain, had won…for the first time…

I’m prefacing this with “NO, I DO NOT WANT TO TALK ABOUT IT, I’M FINE…”, so please don’t bring it up, even if you’re reading this and think it’s a good idea…I’m merely sharing because other women out there need to know that they’re not the only ones who have things like this happen to them.

I’m struggling with transposing things – numbers, dates, times.  I struggle with reading a calendar.  I see things and register a different date and time in my head, even though it clearly states what time I need to  be some place.  Last week I was in Kansas City for work for most of the week, the children were with their dad on spring break.  Everything had gone swimmingly, but I was tired, had an unexpected personal thing come up that I spent three days going back and forth on, and I wasn’t fully focused where I needed to be…it became evident just how much the tired and not 100% being focused effected me when I approached the Southwest ticket counter, looked down at my phone to hand it to the ticket agent and saw that it said “now boarding”…not possible, I was an hour ahead of time, I had plenty of time. She saw the panic come across my face – unfortunately, when panic mode sets in, I can’t think and I freeze.  “Ma’am, let me take a look I’m sure….” and then “oh my, it’s okay, they just completed boarding, we can get you on the next flight, no charge.”  I couldn’t tell her what to do, I was supposed to be somewhere, I don’t miss flights, I fly ALL the FREAKING TIME…I DON’T MISS FLIGHTS…EVER….but I did…

How does that happen??  Not because I was lazy, not because I wasn’t paying attention, I’d checked the flight 2 times…I guess I should have done my regular three though. The issue is this, when given two sets of numbers, side-by-side, I read them differently than you do, unless I’m clearly thinking, and I wasn’t. I completely bypassed the time I was to have left KC and only focused on the later of the two times, the one stating what time we landed, and I planned everything around that.  It’s not the first time this has happened with something, although it’s the only time it’s happened with a flight.  The only time I’ve had to go and sit in a corner and assess what was actually happening, before I could tell the ticket agent what I wanted to do. After a few moments, still on the verge of tears, I walked back up and told her to go ahead and book me on the next flight…then I headed to the food court, just so I could find a proper chair to sit in, so I could call my friend, in hopes of having her talk me off the ledge…only problem was, it was crowded.

So although the photo looks innocent, it wasn’t.  The empty pizza box was that of someone who wouldn’t normally eat a whole CPK pizza.  The soda, is that of someone who’s trying her damndest to steer clear of soda.  And the book, was me trying to distract myself from thinking about what had transpired.  The onlookers at KCI’s Southwest food court, probably thought I was a crazy girl crying because I’d just said goodbye to some dude she wouldn’t see for sometime to come (nope, I’ve done that, while I watched them walk away…without them knowing)…I was merely a woman, morning the loss of what used to be, trying to figure out how in the hell this happened to me, how this was now potentially my new normal. It’s a tough pill to swallow, it’s hard to explain to someone that they cannot rock my world with flipping text messages, or this is what happens.  I’m trying with all of my being to do what I need to do, head down, plowing through life, and the smallest of things can completely knock me off of my axis.

For those of you who poo-poo chemo brain to something of the likes of “pregnancy brain”, it’s not the same…it’s real, it’s hard to manage, and it’s frustrating as all hell.  I can’t control when it hits me, and with what force.  Most of the time it’s because of stress and tiredness, most of the time I can manage it…most of the time I’m okay…but chemo brain, you won this past week.  You put me back in my place, reminded me I don’t have a grasp on this whole life after, and that I need to let things go and not let people have the effect that I allow for them to.  Unfortunately the drugs I was given hit the hardest when it comes to things like this…unfortunately I don’t quite have this thing all figured out.  And for those of you going through the same thing…I’m just like you.

For those of you who’ve see me the past couple of days since that and had no clue this happened…It did, I’m angry, and I’m moving on…please don’t talk to me about it.  I didn’t go back to the office because I didn’t want anyone to know…if I didn’t call to tell you about it, I don’t want to talk about it.

AND, for those of you wondering how often this gets in my way with the children…the answer is NEVER.  No matter what may be going on, I am 210% focused on what needs to be done with them, it takes all of my focus some days so we all end up in the right places, at the right times, without any disruptions.  But when it comes to Olivia and Jaxson, I NEVER FORGET, they are my FIRST PRIORITY.  Their lives have been rocked enough, I do EVERYTHING possible so they feel this whole thing is behind us, although it’s more present than any of us want to admit.

I’m not superwoman…and this superwoman, broke this past week…I’m still angry about the whole thing, although I know why it may have happened, I let myself focus on things that didn’t need my focus, I know better…now it’s back to notes, reminders and figure out a way around all of this in order to keep things like this from happening again…